Good news!

Hattie sees a fabulous pediatric cardiologist, Dr. P. due to an atrial septal defect. From what I understand, this is a hole in the upper chambers of her heart that allows the blood to flow backwards, forcing her body to work extra hard to move all the blood she needs. The last time we saw Dr. P, in January, Hattie had a chest x-ray and it showed that her heart was enlarged. At this visit there were also 2 attempts at an EKG(ever tried to hold a 3.5 month old still long enough to complete an EKG?) and an echocardiogram, during which Dr. P managed to manipulate an infant toy to keep Hattie's attention, run the echo machine and alternate between soothing noises and medical descriptions of Hattie's heart. Quite impressive. At this time we talked about medication(which we decided to wait on), the hole was considered large, and we were told to come back in 2 months and watch for signs of heart failure.

Today the radiologist who looked at Hattie's x-rays could not even tell that her heart was enlarged. Dr. P said that it is still a little enlarged, but we think her heart is doing what we want it to, meaning that the heart will grow larger and the hole will stay the same size, gradually making up a smaller and smaller percentage of the chamber wall. Her weight continues to be good, she's active and her EKG looked great. We don't have to go back for 4 months!

Hooray!

Others looked for the Fountain of Youth, and again never found it. But they mapped Florida.

There is a piece of prose often given to new parents of children with special needs, called Welcome to Holland. It is beautiful, I first read it when I was pregnant with Hattie and we didn't know exactly what her special needs would involve. I clearly remember sitting at a computer in the kid's apartment at work, bawling my eyes out during a lunch break.

Now that I know the source of Hattie's troubles, I spend a lot of time reading about Down Syndrome. I love her care providers, but none of them specialize in Down Syndrome specifically or have time to keep up to date on the current research and wide range of therapeutic interventions parents are trying out on their kids, desperate to gain even the tiniest improvements that will make their kids healthier and happier. There has been a lot of progress in recent years that has given us more information about how the chromosomal abnormalities effect our kids, but no easy answers about stopping it. Nothing your pediatrician is going recommend, or your physical therapist will bring up at a visit.

I've found my way onto a website that lists interventions that a mother wishes she'd known about from the beginning and only discovered for herself through hours and hours of reading, googling, email groups, etc. And she writes

"It is like we have arrived in a previously unknown continent. Some came because of the love of challenge, and some were forced to come against their will. Nevertheless, we are here, facing a world of bounty, but also of extreme danger.

Some of us are explorers, and like the explorers of old, are looking for things that may not exist. For decades, explorers in the New World searched for a Northwest Passage. They never found it, but in the process that guy Mackenzie mapped half of Canada. Others looked for the Fountain of Youth, and again never found it. But they mapped Florida. New discoveries are happening all around us.

Some parents are more daring explorers than others. Some came and stopped at the east coast. And that was enough—and awesome for them. Some pushed west. Some are mountaineers who brave the dangers but benefit in the awesome beauties. Some, like Lewis and Clark are pushing all the way to the Pacific and opening a continent before us."

I have a clear image of the Fountain of Youth that I am pursuing. When I stop long enough to be honest with myself, I know it is a mirage, that I won't really find it. But along the way I will discover as much of Florida as I can, and every step I take will make things a tiny bit better for my sweet little girl, and that makes it worth it.

Part-Time

Officially, today is my first day of being a part-time stay at home mom. I asked my boss to cut down to 20 hours/week, which she approved. My part-time status begins today, although I think I'll be working 30+ hours this week since I didn't have much notice.

I'm nervous and somewhat sad to be losing some responsibilities at work. I love my job and my program. But I'm looking forward to having some TIME. Time to sleep, clean my house, eat food that doesn't come in a wrapper. Time to research the best things to do for Hattie, then actually do them with her.

I thought we could handle working opposite shifts, and maybe we could have in other circumstances. But most of my days are spent driving around town to appointments or staff meetings, then I come home, hand off Hattie and go back to work. I'm exhausted, not spending as much time doing her therapies as I'd like and my house is a wreck...I am not exaggerating. So, with spring fast approaching, here's hoping for positive changes.